ASD child had a meltdown

[Anonymous]

This sounds tough. My son is age 6, level 2, and to be honest, we just don't bring him a lot of places. e.g., things like children's museums and movie theaters are non-starters due to too much stimulation. Even for lower-key activities, we know we only have a couple hours before almost any set of activities will be overwhelming. My wife basically won't bring him anywhere alone because he's gotten too big and strong to handle.

I completely get the concerns, challenges, and frustration over medications. Stimulants can be tough, particularly if you're struggling with feeding. And some made my son more aggressive, while the ones that previously helped have become impossible to find due to shortages.

You're probably already doing this, but if not, you should consult a child psychiatrist about potential medications. If you're getting to a point where you physically can't handle your child's tantrums, there are other things to consider besides stimulants. My son recently started risperidone, and while it hasn't been life-changing, there has been a noticeable improvement. And it has a side effect of weight gain and increased appetite, which is actually a benefit in our case due to an extremely picky eater.

[Anonymous]

Anonymous wrote:I worked really hard to identify antecedent behaviors so I could intervene early. I used to make a plan for absolutely everywhere we went. As soon as I walked in, I’d be scouting out a location where I could remove my son the second certain behaviors and reactions started. If/when he calmed enough we’d go back to whatever we were doing. If he couldn’t pull it together, we’d either stay at our quiet place or we’d leave when that was possible without incident. And a previous plan didn’t necessarily work again in the same location because crowds and other things that change in a given location would affect the suitability of the location.

Those were tough years for us. It got better. But I was always on duty because spouse didn’t recognize the early signs fast enough and son wasn’t as responsive as to me. I kept going out because I didn’t want to be stuck in our house and I felt like things would only improve with continued exposure. The key to this was identifying the antecedent and intervening immediately no matter how inconvenient.

Prior to having my kids, I worked with special needs kids who had serious behavioral problems.

This sounds a lot like our experiences with our (now young adult) asd/adhd/anxious older kid.

We kept a log/diary of what happened on outings with meltdowns to look for patterns. It really helped. We carried lots of snacks - hangry was a major trigger. (I wore dad pants, with stuffed cargo pockets, everywhere.)

Other than relatively quiet, familiar parks, strategic outings were the rule of the day, and usually just one. Never more than one without taking a significant rest between. We prepped by talking about sensory expectations. Kiddo was pretty good at keeping it together away from home, but had regular meltdowns at home where their guard was down.

DW was really good at the theory stuff, reading up on all sorts of things we could try. (She still does a better job on that side and the paperwork needs.) I got the lion's share of every day implementation, including handling most meltdowns. We met regularly with a coach who really helped us balance our perspectives. We also ran a lot of interference for our younger kid who was the main outlet/target for years - that was the hardest part.

Hang in there!

[Anonymous]

I think of DS’s ability to be out and about like a budget, and I have to spend it carefully.

Weeks like this, with a holiday and less routine and extra people around - we have already spent a lot of our budget just getting through life. Add in a museum, and that’s the entire budget spent. No room for a movie.

You seem so compassionate about not wanting DC to be left out, so I can tel you’re a good parent. But it’s not fun for DC to be that out of control, so it isn’t punishment to leave things early or do whatever you need.

[Anonymous]

Anonymous wrote:I’m going to respectfully ask that people not comment on this thread unless they have an autistic child or work with autistic individuals in a professional capacity.

I had the WORST day with my ASD 1/ADHD child. HUGE meltdown in public due to anxiety over something small. We’d bought popcorn for a movie and we waiting in line. He later said he was afraid that we’d eat it all before the movie, but that’s not what he was able to tell us in the moment. He said one angry sentence about how he wasn’t holding the bag and then BOOM. We were in line in an enclosed space, so I felt that we had to leave, as people couldn’t give us room. I had to take kid home, and he’s getting too heavy to lift. Yes, he’s getting multiple interventions per week, yes he has an IEP, yes we’ve gotten years of parent coaching. We cannot take any meds due to the side effects exacerbating another complicating diagnosis. That’s not my decision; that’s the decision of multiple professionals whom I trust.

After today, I told my husband that I can no longer be the parent who takes the kid outside when he’s melting down. I’m simply not strong enough. Kid almost pushed me down the stairs. DH is not willing to be the point person, even though I said I would assist him. I’ve often been the go-to parent in the past. DH said he doesn’t want to do that and would rather leave the kid at home. The sad thing is that kid has more good days than bad, but progress is so slow. Barring a miracle, this will be our life for years to come. Does kid just not to get to do fun things he enjoys? Kid hasn’t had a meltdown in public like this in months. It happens maybe 3x a year in public, but more often at home. We’re planning to talk to our parenting coach, but I’d like to hear from the community. Do you just not take your ASD kid places? I feel like that’s an over reaction, but I did come down heavy on dh this afternoon. I was worried one of us would get hurt, and it would have been safer if he’d helped me.

Talking to the parenting coach is the way to go. Honestly, OP, it sounds like you and your kid had a bad moment that left you feeling, understandably, scared and unsupported. In response, your DH felt overwhelmed by the future "demands" you were making and responded by opting out. Obviously, just leaving your son at home all the time isn't reasonable or desirable. But instead of presenting it as "you must do this" to your DH, just leave it as "let's talk with the parenting coach to come up with a plan that we are both comfortable with."

And, yes, it sucks to have to gently support your DH instead of him independently rising to the occasion as a full partner, but that's how it goes sometimes.

[Anonymous]

We never had meltdowns that severe but hard enough that I didn’t want to go out sometimes. I made a conscious decision not to let our lives get smaller. The main thing is that I tried as much as possible not to care what other people think. So if I can wait out screaming/crying I do it. I stopped thinking I needed to remove him ASAP. Most of the time he calms down and we can continue with the outing. Sometimes he decides he wants to go home.

[Anonymous]

Anonymous wrote:We were also at a museum. We’d seen a special exhibit and we’re going to see the movie. He’d done so well all morning.

I’m sure you know this in retrospect but that was probably too much for the day. And try to reframe it: you had a successful outing in the morning!

[Anonymous]

Anonymous wrote:

Anonymous wrote:Big hugs. I’m a pediatrician and a parent of an ADHDer. I think many of us have been there.

I would check back in with your pediatrician re: meds and see if you can get a referral to a pediatric psychiatrist/psych NP. There are many options and sometimes pediatricians aren’t skilled or knowledgeable enough to titrate psych meds. I have found this is more often the case with older colleagues (I am early 40s).

re the meltdowns, I think you may need to adjust your expectations of what your child is capable of. A crowded theatre where he doesn’t know what to expect and might be hungry or tired to me sounds like a recipe for disaster. Think about attending sensory friendly showings. But if it’s really only once every few months that he has a public meltdown, I think you need to expect that they will happen and make a game plan with your husband. If he is not willing to help with the meltdowns then maybe you don’t do big museum outings and focus on activities where there is an easy exit plan. I only now take my 10yo to museums. It was too stressful before. He is medicated fwiw and that has helped a lot with impulse control.

I would ask your parent coach about this. Perhaps hearing ideas from them will help your husband get on board.

NP, and another pediatrician.

I'll echo the sensory friendly showings as something to think about, in part because meltdowns would be happening in more of a safe space. This might be a context to work on things, too, depending on the dynamic between you and your child.

Regal has showings: https://www.regmovies.com/static/en/us/promotions/my-way-matinee (look for state)
AMC: https://www.amctheatres.com/programs/sensory-friendly-films

List of Virginia autism-friendly activities: https://www.belikebuddy.com/virginia
Maryland: https://www.belikebuddy.com/maryland
Washington DC: https://www.belikebuddy.com/washingtondc

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Sometimes this can feel like giving in or giving up, and the activities may not be for him. But you can sometimes look as building on successes. It sounds like his meltdowns are very sporadic. If it happens in an autism-friendly setting, you are less likely to feel the pressure to fix it right away. You are not alone in this, and plenty of people are struggling with very similar situations.

Please know you have friends and are supported in many places.

the Alamo Drafthouse in DC is also a good one! they have sensory showings but they were also really great at a normal showing with my DS.

[Anonymous]

Anonymous wrote:I think of DS’s ability to be out and about like a budget, and I have to spend it carefully.

Weeks like this, with a holiday and less routine and extra people around - we have already spent a lot of our budget just getting through life. Add in a museum, and that’s the entire budget spent. No room for a movie.

You seem so compassionate about not wanting DC to be left out, so I can tel you’re a good parent. But it’s not fun for DC to be that out of control, so it isn’t punishment to leave things early or do whatever you need.

this is such good advice!

[Anonymous]

Anonymous wrote:

Anonymous wrote:We were also at a museum. We’d seen a special exhibit and we’re going to see the movie. He’d done so well all morning.

I’m sure you know this in retrospect but that was probably too much for the day. And try to reframe it: you had a successful outing in the morning!

This. You over-spent the budget. He did well in the morning but he used up his social stamina to accomplish that. Next time don't plan such a long outing, especially around the holidays.

I get that you want him to be out and about and have experiences, but it's not beneficial if it leads to major meltdowns. You need to carefully plan his "dosage" of out-of-the-house activities so that it's within his capacity. That way he can benefit from the activity but not get overloaded.

[Anonymous]

OP it’s so hard. I feel so
Much guilt that my older kids spend way more time at home than they should or would like to bc I get so nervous about how their youngest sibling will react. I am trying to build up confidence in taking her more places. I’d say make sure you are not pushing it - I think a museum and movie was likely too much. It takes these kids so much effort to hold it together. We have started doing lots of mini outings, like just go and get ice cream and go home.

[Anonymous]

Hi OP. Days like these are hard. How old is your DC? We have a 15 year old who hasn’t had a meltdown in 7 months (fingers crossed). This is a lifetime record. She also could not tolerate ADHD meds very well until recently. It was a lot of trial and error. We have learned to plan our family outings around her needs. In contrast to another poster, I do not begrudge your husband. Neither of you should be stuck removing a kid with ASD from a situation in the middle of a meltdown. It’s really really hard on everyone (most of all, your kid). Over the years, we have learned a number of things. Through trial and many, many errors. We talk through the situation before hand. Over and over and over for a couple of days (most recent example - we are going to Auntie Larlas for thanksgiving dinner. There will be a lot of noisy kids there.) We also plan that she will not have as much stamina as others. We’ve also noticed she melts down AFTER the overstimulating thing - so exactly like yours, I would totally predict she’d do the museum pretty well and then meltdown in line for the movie. So we do things like see ONE small exhibit and then the movie. Cut the stimulating activity down. I’ve also learned to see the very subtle warning signs. Ours twists her hair. Starts being grouchy (“I don’t WANT to walk! I HATE this straw!” Whatever). As soon as I start seeing the warning signs, it’s exit stage left. And everyone in our party knows, when the warning signs start, it’ll be time to go.

It is a little limiting on the parents and siblings, but it’s much better than enduring a meltdown.

We just got through a 9+ hour drive two ways, a chaotic thanksgiving dinner, a trip to the thrift store, and sharing a guest room with his sister with NO meltdown. And only one warning sign - exit stage left situation.

So there’s hope! Hang in there!

[Anonymous]

I’m very sorry, OP. I agree with the others about short outings, especially around the holidays. Halloween through my daughter’s birthday in January is the hardest time of the year for us. We have to be extra careful about what we do.

That said, three meltdowns per year is really fantastic! Honestly. You must be doing SO MUCH right. I don’t say that to minimize how awful the meltdown was but for you to recognize that you really can handle three bad days per year. You can. No one got hurt. It was supremely emotionally uncomfortable for both you and your child, but you made it through, and you can make it through the next one too, if three meltdowns per year is the cost of having experiences outside the house. Obviously try to plan to avoid them but meltdowns happen. And you will be ok when they do.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We were also at a museum. We’d seen a special exhibit and we’re going to see the movie. He’d done so well all morning.

Maybe two things were too much and caused an overload.

This! It was way too much. I have a ADHD and ASD kid and I think you underestimate how much outings take out of them. They are physically drained by concentrating and the overstimulation. My kid is a teen so they will verbalize “I’m done.” She would love to keep shopping (a fun activity for her), but she just hits a wall. Your child really wanted to watch a movie, eat popcorn, etc. but was just done. He wasn’t old enough to articulate it or didn’t want to disappoint you.

[Anonymous]

Anonymous wrote:We were also at a museum. We’d seen a special exhibit and we’re going to see the movie. He’d done so well all morning.

Sounds like you might be better off splitting up outings into different days.

[Anonymous]

OP, he had museum fatigue! It's a real thing. It has been a term in the industry since 1916, and curators use it to plan and pace their exhibits so that people can have a manageable sensory and physical experience. Think like a curator and plan him a manageable museum experience.

https://en.wikipedia.org/wiki/Museum_fatigue